Butterflies and Second Chances: A Mom's Memoir of Love and Loss

By Annette Hines

The world Annette Hines knew exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease—a degenerative, life-limiting illness. Annette's joy quickly turned to apprehension and she knew nothing would ever be the same again.

Butterflies and Second Chances is the inspiring true story of a mother's special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis. It is a story of sacrifice, dedication, and the life-altering adjustments a special needs parent has to make when confronted with the unthinkable. But most of all, it's about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity.

Annette and Elizabeth's powerful story provides hope, solace, and a path forward for parents of special needs children, and it will resonate with families everywhere.

• Language: English
• Publisher: BookBaby
• Release date: Mar 14, 2019
• ISBN: 9781544512655

Book preview

]>

]>

Copyright © 2019 Annette Hines

All rights reserved.

ISBN: 978-1-5445-1265-5

]>

Contents

Prologue

1. Here She Is

2. The Big Move

3. The Diagnosis

4. The Death of a Marriage

5. My So-Called Career

6. Caroline

7. Elizabeth Grows Up

8. Decisions

9. A Good Death

10. After

11. Now

Epilogue

About the Author

]>

Prologue

A Day of Reckoning

Why isn’t she crying?

At first, no one answered me. It didn’t help that I couldn’t see what was going on; they had put up a curtain for the C-section. I knew my daughter was somewhere in the other corner of the room, but I couldn’t see what the doctors were doing with her. And I wasn’t hearing any noises or baby sounds. But having never given birth before, I didn’t know how unusual that was.

Finally, somebody told me they were putting in a breathing tube. That’s why there hadn’t been any crying: apparently, she couldn’t breathe. I was also told her Apgar score was four. The number meant nothing to me. Four out of what? Out of four? Out of ten? A hundred? I’ve always liked numbers, but had no idea what this one represented in the scheme of things, what it was measuring.

Well, this is kind of absurd, I thought. But before I had a chance to ask for an explanation, there she was—my baby, being wheeled out of the delivery room. I barely saw her as she rolled by.

I didn’t get to see or hold her for another eight hours.

Elizabeth was born eleven weeks early. I didn’t think it was a good idea for her to be delivered so early. But the doctors said it was imperative. I had been going in every week for stress tests, and at twenty weeks, they’d put me on bed rest because she wasn’t growing. From then on, they’d monitored her closely, and when I’d come in for this most recent appointment, they’d decided they needed to deliver her right then and there. She was in distress. Something was wrong with her heart rate, and there had been very little movement in my belly over the past couple days. Things hadn’t felt right, I told them. It was too quiet in there. That made them nervous.

We always trust a mother’s instincts, they reassured me. I wanted to yell at them that I wasn’t a mom yet and I didn’t know anything. They shouldn’t trust my instincts! What did they want to do?

Turns out, one thing they wanted to do was have a C-section, which admittedly upset me. I asked why I couldn’t be induced, and they said it would take too long and put even more stress on the baby. With induction, the contractions are stronger, and it would have been too hard on her.

Okay, well let me call my husband, I said, So we can talk this over with him.

They told me there was no time to wait or discuss. I could go ahead and call him and tell him to come, but this was happening now. I couldn’t reach Wayne anyway; he was out looking at some property somewhere. I left a message on the voicemail in the family business office—this was back in 1996, before we had cell phones—telling them they needed to find Wayne and let him know that I was about to have the baby and he needed to come to the hospital.

I did manage to reach Wayne’s dad, my father-in-law, who was so calming and sweet to me, always with such a soothing voice. I needed it. I was panicked, desperate for somebody to come and be with me. I can’t do this by myself, I thought. I was so unprepared for it all. I hadn’t even taken my birthing classes yet. I was actually all signed-up for them, ready to go. Geared up to excel like usual—acing my classes is what I do. But then, I never got the chance. The baby came early. Very early.

Wayne made it to the birth just in time, but it didn’t matter because they took Elizabeth away immediately. It had all been rush, rush, rush—a whirlwind of signing papers, being swept down the hall, my clothes stripped off, strangers pouring into the room, and then a whole team of twenty or more attending to the baby. All the commotion made me even more panicked. Then, minutes later, they were whisking Elizabeth away. Wayne wanted to go and check on her, but they told him they were doing procedures, and we wouldn’t be able to see her for a while, so he should just stay with me.

None of my family could get there in time from Massachusetts; no one was expecting the baby to come so soon. We didn’t have a crib yet. I wanted Wayne to handle things and take charge of the situation—to tell me what was going on and what I needed to do. I wanted him to calm me down and say everything was going to be okay. But he did none of that. He was just very, very quiet. He didn’t step up in the way I expected him to, the way I always pictured my husband doing.

We’d only been married nine months at that point, and maybe I didn’t know him very well yet. It was certainly a foreshadowing of what the next few years of parenting with him would be like; he just didn’t know what to do. It had started off well. Wayne had been great in many ways. First, he was so excited when I got pregnant, just looking forward to being a dad. Then, when the doctors had put me on bed rest, and I was forced to quit my job, he worked a second job to take up the slack. He was taking care of things, and I appreciated him for that. Work was something he knew he could do, a way he could help, a language he was familiar with, his comfort zone.

But then, the day of Elizabeth’s birth, I started to see this different side of him. He turned quiet. It was like he just went dark on me. It marked the beginning of my seeing how fragile my husband really was, of losing faith in him. It all started the day of her birth—but it wasn’t until many hours later, in the middle of the night, that I was finally allowed to see Elizabeth. The nurses wheeled me to the NICU (Neonatal Intensive Care Unit). Until that point, I had had no idea what was going on. Nobody had given me any information. All I knew was that my daughter was on a ventilator, and she was really small—only two pounds.

Also, she had hair all over her—lanugo, they called it. She looked like a little monkey. I was horrified, to be honest. I kept waiting for the motherly instinct to flood over me, but it never came. I definitely didn’t look at Elizabeth and say, Oh, my baby, I love you so much.

It wasn’t like in the TV commercials—you know, the ones where the baby gets wrapped in a blanket and placed on the mom’s chest and Mom just falls instantly in love with her new child. That’s how I thought childbirth would be. I had all these false expectations that I would get my own beautiful Hallmark moment, like on TV.

In reality, I had none of that. All I could think to myself was, I’m not feeling this, I’m just numb. Elizabeth looked like a monkey, and not a cute one either. She had tubes and needles all over. When were the doctors going to remove that stuff? I had no idea. The whole situation was just like what I’d been experiencing the past few weeks coming in for stress tests: I constantly felt in the dark. Nobody had told me that my baby might be premature, that she might be born at only twenty-nine weeks, that I might have to have a C-section, that there were all these risks, that she might not be doing well. I certainly didn’t expect not to be able to see her and hold her after they took her out of me. I just wasn’t prepared for any of it. I didn’t know the half of it.

How could this happen to me? I was twenty-eight years old. I had made all the right choices. Having grown up in poverty, I’d always had a plan in life—determined from a very early age to make myself a success and create the kind of future that I wanted. Suddenly, I was at a loss. All my intentions had gone out the window. I didn’t know what to do. But I was still hopeful. I still thought I was going to get my Hallmark moment, my bonding moment with my baby. It will be OK, I told myself. It would all pass at some point and then I would be able to take her home. Then my real life would start. Not this crazy thing that had happened to me in the hospital, but my real life that was promised me, the one I had always dreamed about.

These were the thoughts racing through my head as they wheeled me back up to my room. When we got there, it was right next to the bright nursery where all the healthy babies were staying. I couldn’t bear to look. It was like getting hit in the face with a board. And when I think back now, twenty-two years later, to that day when Elizabeth was born, I still feel the force of that painful blow.

Little did I know how crazy things would soon become.

Five days later, I left the hospital. Without Elizabeth. Anyone who’s ever had to leave the hospital without their baby will understand just how very strange it is.

She was in the NICU for the next nine weeks, and I visited every day. Wayne rarely came with me. His family didn’t visit. I didn’t know what I was supposed to do with this tiny baby hooked up to all these tubes. Yes, I had the nurses. They were teaching me how to take care of her, how to pump my breastmilk and prepare a bottle, how to give a bath to a two-pound baby. But the routine frustrated me in the same way I had been frustrated by my dealings with the doctors: these were things in their comfort zone, things they wanted to talk about. What about the conversations that weren’t happening? What about knowing how to look for signs of brain injuries, blindness, missing developmental milestones?

At the time, I couldn’t have known about these missing conversations. I didn’t know what I didn’t know. Instead, I just felt really lost. I was stuck in a kind of holding pattern or loop, waiting for all this weird stuff to finally end so that I could do what I was supposed to be doing—being a mom.

]>

Chapter One

1. Here She Is

The day I took Elizabeth home from the hospital, she was only four pounds. Had she still been in the womb, it would have been thirty-eight weeks (far into the third trimester, when babies usually weigh in at around six pounds).

All I wanted was to feed her and help her grow. Those were the instructions: She just needs to grow at this point, said the doctor nonchalantly. Feed, grow, rest, that’s it. But it wasn’t so easy. Elizabeth had a weak suck; breastfeeding wasn’t going well. On my part, it was hard to develop milk, given that she hadn’t been with me for the first nine weeks. I wasn’t producing enough, and she wasn’t latching on right.

I had visited Elizabeth every day, all day, at the NICU. I would try to nurse her when she was able, and also pump. The nurses had been very helpful and assured me everything would be easier once Elizabeth got bigger—and especially once she was out of the hospital and home with me. I would be more relaxed there, they said. For now, I just needed to concentrate on drinking lots of water, eating right, and getting good sleep.

They really believed that was all we were going to need. Or maybe they didn’t—I guess I’ll never know for sure. But when I think back to that time, I always remember them as kind and supportive. I appreciated that they had given me specific things to do. It had made me start to feel like I had a plan again. Or at least I had strived to feel that way. I had possessed a new sense of purpose, had been reading all the baby books, making sure everything was ready for when I finally got